New Fingers, God’s Best & Choosing Kind

The past couple of weeks have been a whirlwind of adventure.

SURGERY UPDATE

Campbell’s surgery went very well, and she emerged with two new fingers in splints and bandaged feet. Campbell’s surgery was at CHOC, and while there, we saw three of her therapists: Julie (Braille Institute), Su Jin (PT), and Polly (OT), as well as Candace, CHOC’s concierge nurse. One of Campbell’s surgeons and our friend Jason Toranto visited us in the waiting room, and a nurse who attends Eastside came by to see Campbell once she settled in her room.

Campbell and Daddy the morning of surgery

Campbell and Su Jin, her CHOC physical therapist

Because of Campbell’s pain management, we were apprehensive about flying so soon, but we had no need to worry. Joel and I felt God’s grace as our flight back to CO was the best we’ve had with any of our children, let alone right after surgery.

 

The boys had a ball with Momma Ann while we were in CA.  Our freezer is full of cookies they made together.

PUSHING THROUGH PAIN TO GOD’S BEST

We’ve been looking forward to this finger release for some time, and our excitement for the results were tempered by seeing our girl struggle with pain. The reality is in order for her to receive the gift of fingers and better dexterity, she has to endure the painful process of surgery and rehab. It’s ironic how our emotional and spiritual journey mimics Campbell’s physical one. In order to receive the best blessings, we have to push through the pain of what looks like a shattered mess.

How many times have we found unexpected joy after a particularly hard run? Watching Campbell push through her pain to the blessing encourages me that God really does desire good for those who love Him. The story does not end with the mess.

CHOOSING KIND

After a few days of rest, Campbell bounced back and the following week, she and I visited the kindergarten class at Southeast Christian School in Parker, CO to talk about differences and how to choose kindness. We read a book together called It’s Okay to be Different and I shared a little about Campbell’s story. Inquisitive and curious, the students asked some great questions, and we talked about choosing to be kind and friendly when someone looks or acts different. Our time ended with dancing to music with the students. Many thanks to Mrs. Izzi and her class of Smarties for a great morning!

 

Mrs. Izzi’s class of Smarties!

CAST REMOVAL

Two weeks passed quickly, and soon, we were once airborne to visit Dr. Jones and Dr. Weinert. While Campbell did not appreciate the cast removal process (she cried during the soaking off of the inner bandages), she immediately took to her new fingers and began exploring them. Her fingers emerged raw and scabbed, yet beautiful. Her toes look great, too, and she has resumed walking. Watch out, world! Campbell is on the loose!

 

First look at her fingers

A visit with Julie from Braille Institute

Campbell and our dear friend Karen

Running her new fingers under water for the first time

We’re almost a week into bandage changes, and Campbell is doing well. She’ll have one more follow-up in a few weeks to make sure the skin grafts have taken and there are no infections.

Thank you so much for your prayers and notes of encouragement! God has blessed us through you, and we are grateful.

 

 

She’s done!

Campbell is out of surgery, complete with new fingers wrapped inside of casts.

Dr. Jones said it went well, and we’ll return in a couple of weeks for cast removal.  Dr. Weinert cleaned up the nail beds on her toes, so she’ll have five distinct toenails on each foot.

We will be heading to see her soon. Thank you all for your prayers and messages of encouragement!

Pointers, Sister!

Today is the day Campbell gets her index fingers!

While we are nervous, we are so excited she will have another finger on each hand, and she is one step closer to having all of her fingers released. We’ll be checking into CHOC’s pre-op shortly as Campbell is the first case.

One surgeon will release her pointers while another works to clean up her toenail beds.  She’ll be casted in the OR, and then we’ll get to see her.  The surgery time will be around six hours.  Her casts will stay on for two and a half weeks, and then we will begin the dreaded dressing changes.  Her hand surgeon wants to wait at least six months before the final finger release between her middle and ring fingers in order to generate good blood flow to all the fingers, so we’re looking at late summer for her next finger surgery.

We kindly thank you for your prayers for Campbell as she heads into surgery.  Please pray for the surgeons for wisdom and steady hands, for the nurses and staff who will be caring for Campbell, and for her body to heal quickly, free of pain.

These hands will soon have pointers! 

Other Important Milestones

The past few months have brought many changes.  First, Campbell is WALKING!  For most  parents, those first few steps are a treasured moment.  For Joel and I, we are ecstatic!  After HUNDREDS of hours of therapy, Campbell is walking on her own.  Many thanks to all of her therapists who have worked and encouraged her on this journey of independence.

Not only is she walking, but Campbell recently started crawling.  About half of children with Apert Syndrome skip crawling altogether.  We thought Campbell was going to go straight from sitting to walking, and then a couple of weeks ago, she surprised us by getting on all fours.  This is fantastic as crawling is very good for brain development as well as for safety.

Overall, we are seeing a tremendous bump in Campbell’s development.  She started speech in January and is busy working on imitating sounds.  She loves music and sways to the beat.  For her, therapy mostly seems like play, which is a great thing.

Also in January, Campbell started attending the toddler time at Anchor Center for Blind Children.  Her class includes kids with all sorts of diagnoses and vision impairment, and the teachers are encouraging with helpful advice of what to try at home.  Anchor Center is a very comforting place. From the garden classroom and music therapy to literary time and sensory snack, it’s an outstanding school, and we feel blessed our girl is able to attend.  Campbell particularly loves the music center, which pleases her Daddy very much.

Campbell working on her motor skills at Anchor Center

Some Quick Candids

Campbell entertaining herself (and us) while waiting for the eye doctor.  

Campbell was a flower girl for a dear friend’s wedding.  Courtni was a gorgeous bride who has an even more beautiful heart. She recently opened No Limits Learning Center, a program for young adults with developmental needs.  What an honor to be part of her special day!

 

Happy Fall!

Happy fall! While our family has been in a busy season settling into life in Colorado, Campbell is doing great and has adjusted well to the mile high altitude. While she is still on oxygen at night and during nap time, she continues to grow and is working hard on walking and talking. She now says “mama” and uses the sign for “more”. My heart melts every time I hear her say “mama”.

Campbell loves the outdoors, which is good, because we live in the country. There is tons of space and wildlife roaming. One of her favorite activities is to watch the deer out the front window. Apparently, a family of feral cats has adopted us, and Campbell likes to watch the kittens play in the afternoons.

Through our boys’ school, I met a mom who is an occupational therapist through Developmental Pathways, an early intervention service provider in our area. She helped us get connected to the intake coordinator. Later this month, Campbell has an appointment with ChildFind (the assessment center in our area) to see what services she might qualify for. She’s also been assigned a service care coordinator who has already begun pulling together her service team for OT, PT, speech, etc. I am so thankful for the smoothness of the process this far.

Another praise is that Campbell most likely will qualify for the Medicaid waiver. This was a difficult waiver to get in CA; however, because of her syndrome, Campbell will be covered in CO. This should help with some of the out-of-pocket medical costs, and we are very excited about this.

Campbell is getting situated with her pediatrician and local team at Children’s Hospital of Colorado. Her pediatrician works primarily with kids from the special clinics and has a great team, including a dietician who is working with us to keep Campbell healthy and gaining weight.

Joel and I have been in discussions with Campbell’s doctors about what surgeries are next on the horizon. Her last procedure was in May, and it has been so nice having some “normal” family time. (Our family life is anything but normal, but I guess we’re adjusting to the new normal.)   We’ll update as we know more/learn of dates.

This fall has been filled with lots of activities and visits.  In September, Campbell and her brothers toured Tiny Town with Momma Ann. While the boys liked exploring the village of tiny houses (and the town jail), Campbell preferred the train ride. Also in September, Uncle Matt and Aunt Christa came to visit and helped get our family settled into our house.

In October, our family participated in a balloon release for Phoenix Coleman. Phoenix was two months older than Campbell and passed away in May. In honor of her second birthday, many Apert families around the US released pink balloons for Phoenix. It was a hard reminder how precious life is and to love each other and make each day count.

Also in October, we had a visit from our CA friends the Mortons. Together, we went to Idaho Springs and Breckenridge, and Campbell had her first taste of snow of the season. The following week, Campbell and I got to visit the Miller family. This past weekend, Uncle Jordan came to visit. What a wonderful treat to see such sweet friends!

On the morning of Halloween, Campbell, her brothers, and our friends the Weckers trick-or-treated nursing home residents at the Victorian House in Parker. Kyle was excited to see that one resident uses the same oxygen condenser as Campbell. The kids had fun going door-to-door of the house and meeting the residents.

Halloween night, our family spent time with friends and Campbell stayed inside where it was warm while her brothers trick-or-treated. The holiday was very fun – so fun, in fact, we forgot to take family pictures. This is a shame because everyone in the family dressed up (even Daddy went as Mr. Incredible, naturally). Oh well, (hopefully) we’ll remember next year.

As we start November, we are reminded of how blessed we have been by those who have loved and supported us on this journey. Thank you for your prayers and for your love.   May this season be full of blessings and grateful hearts.

Campbell with Miss Courtni before we left CA

Swinging outside in CO.  She did not like that the swing came to a stop for a picture.

Getting a heart check up from big brothers Kyle and Colton

Just being silly

2014 Summer Update: Transitions

The past several months have been a whirlwind. So much has happened with Campbell and with our family, and I’ve fallen behind on updates.

Instead of the cranial reduction surgery in April, Campbell had a shunt revision at CHLA. About a month later, she began projectile vomiting and lost consciousness so we went to the ER. Her shunt was full occluded, and she had an emergency revision done at Children’s Hospital of Orange County (CHOC). Since then, she is doing very well and is enjoying summertime activities with her brothers like swimming with friends, going to the beach, playing at the park, and going for walks.

While she’s not yet speaking, Campbell’s personality is emerging and she is making great strides with her therapists. She also definitely shows her preferences on toys and activities. It is so fun to see her “spark” come alive.

This summer is bittersweet for us as our family is relocating to Colorado in several weeks. Joel will be working in Aurora, CO, which is near Parker where I grew up and where we will be living. While we are excited about what this move means for our family life, we are very sad to leave our friends and community in California. Our friends and church community have carried us during some very dark and hard days, and I don’t know how we would have made it through without them. My heart grieves to leave and overflows with love and gratitude for the wonderful love and compassion of these people. This community is amazing. May we learn to love others as we have been loved.

With the move, Campbell’s care is transitioning. Her every day, on-going care will transition to Denver, and her surgical team will be in southern California. We are working with medical teams in both places to ensure that she is covered.  This means Campbell will be back in So Cal frequently during the next several years, which is fitting since she is our California girl.

A change in surgery

We visited CHLA on Monday for Campbell’s pre-op appointments and surgical consults. During that time, her neurosurgeon determined her shunt has an occlusion.

Due to the risk associated with the cranial surgery, the procedures planned for April 23rd are on hold and instead, Campbell will have a shunt revision.  Campbell’s brain has been circulating some CSF on its own, which is good news.  The hope is the shunt revision followed by helmet therapy might offer similar results with lower risk.

While sometimes difficult to process change in the moment, we know Campbell’s surgeons have her best interest in mind and want good for her, and we feel confident moving forward with this plan of care.

The shunt revision surgery will be Friday morning, April 25th.

When Campbell was born, Joel and I decided that we would give her every chance, within reason, of a “normal” life. This meant if we need to take some risk, so be it.  What we’ve recently had to weigh is risk and reward.

When facing a weighty decision, we’ve imagined ourselves sitting across from Campbell at the table when she’s 20, and her asking us why we did or did not take a particular course of action that impacted her health and life.  We want her to know that we’re giving her every chance at living a larger life, and that fear isn’t holding us back.  The reality is we have sat in rooms that have changed us, regardless of what decision was reached.

A wise friend told us if Campbell is able to struggle through the issue of her care with us, she will be able to struggle through it with God. Our job as parents is to make the best decisions we can at this point in time. We believe that God is sovereign and that He will accomplish his purposes, and so once again, we commit our daughter, her care, her team, and her future to Him as we know He loves her most and best.

Commit all you do to the Lord, and your plans will be successful.
(Proverbs 16:3)

Hand and Surgery Update

Campbell LOVES her new fingers.  Sometimes, we catch her holding both hands up to her face, inspecting them in wonder.  They are healing quite nicely, too, and while she prefers her left over her right hand, she is using both to mouth balls, toys, and anything else she can pick up.

The skin between her fingers has some minor “creeping”, so we are performing daily scar massage and Campbell wears hand splints at night.  Dr. Panossian will deepen the webspaces during her next hand surgery in June.

The night before her surgery, Joel’s folks and I made plaster molds of her hands. The biggest change is on Campbell’s right hand.  Prior to surgery, her fingers fused together in a point. During the procedure, Dr. Panossian separated the finger bones and pinned them straight.

We are looking forward to what her hands will look like after the remaining syndactyly releases.

Campbell is a really happy baby and is working on sitting independently, standing with some help, and making first sounds. She smiles most of the time and loves to jump in her bouncy-seat. Her brothers remain her favorite teachers (and entertainment), and she cries if left alone in a room. Campbell is quite a social creature.

Each week, her OT and PTs at CHOC work hard with her, and recently, when Campbell developed separation anxiety, we got the boot from the therapy room. This is a great sign for Campbell’s development as she recognizes her family members and is attached to us. Good for development, but not great for therapy.

Campbell’s next surgery is closing in fast and will be Wednesday, April 23rd.  Dr. Urata will reduce some of the width and size of her head and will bring out her forehead, which should help with head control as well as improve the effectiveness of future procedures.  This is quite a long surgery and will be the most intense that Campbell has experienced.  We humbly ask for your prayers for Campbell, for us, and for the surgeons and medical staff.  Thank you, friends!  We are thankful for you.

 

 

 

San Diego Half Marathon

On Sunday March 9th, 28 people participated in the San Diego Half Marathon as part of Team Campbell to support Campbell and raise awareness of Apert Syndrome.  We met the day before at The Spaghetti Factory in the historic Gaslamp District for an early pasta dinner.  We loved seeing all the walkers/runners and meeting their families.  We tried to capture the group participating in the race below (just missing a few faces in this photo.)

The weather for the weekend was stunningly beautiful and even the spring-forward time change worked in our favor by keeping the running conditions cool. The city of San Diego was at its finest.

Some of Team Campbell at the starting line.

Campbell enjoyed her front row view of the race.

The race course included a steep hill between miles 8 and 10, and then the rest of the course was downhill.

Team Campbell is made up of warriors. Little did we know that a couple of runners are quite competitive (ahem, Jerome), and averaged a sprinting pace for 13 miles (even uphill).  Some ran the 5k while others took the walking route for the half and enjoyed the sunshine.  Our coach, Jen, ran while not feeling well demonstrating to everyone how to battle through with determination.

We had a very special late addition to the team, Paul, who prayed for Campbell throughout his walk of the course.

Joel pushed Campbell across the finish line.  A treasured memory for dad and daughter to cross together.  When we registered, we were asked to write why we were participating in this race.  Campbell’s story was chosen as one of the “Overcomer” stories for the overall race – a great honor!

Some of the children who came to support their parents during the race decorated their own Team Campbell shirts with markers.  The kids were the best supporters!

A huge THANK YOU to everyone who supported Team Campbell for the San Diego Half.  A very special thanks to Jen Kidwell (and her dad who ran with an ankle injury) for her coaching, wisdom, and encouragement. It was a spectacular weekend!

Campbell’s Pinkies and Thumbs

Campbell’s first syndactyly surgery went very well.  She is tolerating the casts and is adjusting to not having her hands available for playing and eating.  Her new method of playing involves dragging her casts across her light-up toys to see how much noise she can make.

Here are Campbell’s pre-surgery hands.  I love these sweet little mittens and already miss them.

Bright and early last Friday, we headed to CHLA for her surgery.  Campbell was the first case, and she and Daddy played peek-a-boo in pre-op while we waited.  When it comes to smiling, she lights up the room.

After surgery, Dr. Panossian met with us to discuss the procedure.  He showed us a few pre-casted pictures of Campbell’s hands, and they looked wonderful.  He and his team were able to release her thumbs and pinkies and set the remaining three fingers straight with a pin.  The pin will come out as the hand heals, and having the fingers growing straight will help with future release surgeries.

We are excited for the cast removal next week and to see her new fingers.  After Dr. Panossian removes her casts, the OT department will fit Campbell with a splint which will help keep her webspaces deep while her hands continue to heal.

Dr. Panossian also cleaned up the nail beds on Campbell’s feet, which should ward off ingrown toenails as she grows.

After plastics finished her hands and feet, Dr. Maceri scoped her ears and put in ear tubes.  He said she had a lot of thick fluid behind her ear drums.  Since that procedure, Campbell has begun talking to us more, and becomes animated when we play music.

By Friday morning, Campbell was feeling much better.

We got the okay to head home.  I wasn’t thinking about her casts when I packed her clothes to wear home, and her outfit didn’t fit over them. But having no clothes didn’t faze Campbell at all.  She proudly wore her Tiny Superheroes cape through the lobby and on her lap for the ride home.  I wish I could say it’s the first time our girl has ridden home wrapped only in a blanket and diaper, but it’s not.  Clothes are highly overrated, right?  

Christian, Kyle, and Colton were so excited to see their sister.  The first question was, “When can we sign her casts?”  Kyle practiced his name because he wanted to write it “just right”.  Each boy also wanted to snuggle Campbell in his lap for a few minutes.  These boys really miss their sister.

Overall, recovery is going well.  The days have been good; the nights have been a little rough, but each one is getting better.  Sleeping would be tough for me, too, if every time I moved, I hit myself in the face with a cast.  Add a helmet, middle ear adjustments, and a natural propensity to sweat, and it’s easy to see why sleep is so elusive.

Today, we’re heading back to CHLA for a CT scan to check out the progress of Campbell’s skull.  Our hope and prayer is that she is still a candidate for cranial surgery.

January Update

January – Off and Running

After a quiet December, Campbell is catching up with therapy and doctor appointments, and 2014 looks to be a busy year.   She is such a sweet and content little girl.  Campbell is working on sitting, and is most happy when playing with her toys, watching her brothers, or being outside.  The boys provide tons of entertainment for her.  All three are doing well and love on their sister often.

During the past two weeks, we’ve made a number of trips to LA to meet with plastics, pulmonary, ophthalmology, and orthopedics, and now have a revised surgery plan.

Hand Surgery This Week

This Thursday, January 23^rd, Campbell will have her first syndactyly release surgery to begin the process of separating her fingers.  Her hands are considered “mitten” style with a free left thumb and a webbed right thumb.  The rest of her fingers have bone fusion and are classified as complex syndactyly.  Because of the amount time needed for this first hand surgery, Dr. Panossian recommended waiting to separate her toes.  Also on Thursday, an ENT will scope her ears and possibly place tubes.  If all goes well, Campbell should come home on Friday.

After surgery, Campbell will be in arm casts for two weeks.  Once the casts come off, she will have daily dressing changes.  Other parents have told us that syndactyly release surgeries are most difficult due to painful dressing changes.  We are praying this time passes quickly and that Campbell will be pain-free during the follow-up care.

Cranial Surgery

After meeting with Dr. Urata, the plan for Campbell’s cranial care is to address her head size/shape through surgery in next few months.  Her shunt is working and the hydrocephalus is stabilized, which is very good.  However, her head size is still too large and there is quite a bit of cerebrospinal fluid (CSF) between her brain and skull.  At this point, surgery is her only option.  This procedure will be the most intensive one Campbell has faced, and it carries a fair amount of risk, but the option of not doing it would create life long effects making future surgeries less effective and affecting her quality of life.  Due to the plasticity of the brain and how it retains water during the first months of life, this surgery is only an option for about six more months.  Campbell is scheduled for a CT scan in a couple of weeks and a return visit to see Dr. Urata in February.  If she is still a candidate, she’ll be scheduled for surgery.

Because of the upcoming cranial surgery, Dr. Borchert in Ophthalmology recommended moving her eye surgery to correct the strabismus to later this year after the cranial work is finished.  Campbell’s eyesight continues to improve, and she’s using her eyes together more often, still typically in the downward gaze.

This month, Campbell’s OT and PT is transferring back to CHOC, and she’ll receive vision/infant stim from Blind Children’s Learning Center and the Braille Institute.  Campbell loves to play and lights up with her therapists.   We feel very blessed to have such quality therapists caring for our girl.

Team Campbell

The San Diego Half Marathon is on March 9^th, and we’ve put together a team to raise awareness of Apert Syndrome.  Members of Team Campbell have been training (both walkers and runners), and if you would like to join us, it’s not too late.  The race offers a half-marathon, couple half-marathon, and 5k option. Please email campbelltaylorjohns@yahoo.com for details.

Prayer request

• Thanksgiving for overall good health outside of surgeries and for new insurance.
• For Thursday’s hand/ear surgery:
  • Campbell would remain healthy between now and then
  • for the surgeons, nurses, and staff who will be caring for her
  • the skin grafts would be successful and the release go well
  • for healing – that infection would stay away and Campbell would be pain-free
• For the upcoming CT and cranial surgery that Campbell would remain a candidate for this procedure and for all involved

Thank you all so much for your prayers and support!